A bell's not a bell 'til you ring it

Today she rang the bell. Like millions of others who have completed cancer treatment. She rang it, she ate a glazed doughnut, and she delighted the clinic. It was a good day. She did it! We did it.

In omnia paratus

2 years, 3 months, 3 weeks, and 1 day since diagnosis - and she is finally done.

"Big news! No chemo!" was her refrain today. There will be lots of celebrating in the days and weeks ahead. We started today with lunch with Aunt Mare and Aunt Cait and Ellie, ice cream cones, and dinner at Frank's.

I bought her a t-shirt for today. It says "In Omnia Paratus" -- which means "ready for anything." It's a reference from her second favorite TV show - Gilmore Girls. Yes, second only to Barney, Hope loves Gilmore Girls. Has watched the entire series multiple times. Knows every character. Can repeat whole scenes verbatim. It's a long story...

But here she is, 842 days later. 41% of her days on Earth later. She is ready for life without chemo.

Hoping for continued health. Hoping for few long term side effects. Hoping for happiness, adventure, joy, calm. Hoping.

Something old, something new

Two days left...

This week Hope had her very last Music Together class - and that means I had my last class too. Our family has been involved in these weekly music classes for kids 0-5 and their caregivers since Celia was a baby -- so going on 13 years (with a couple of years off between Quinn and Hope). It was the first activity we returned to when Hope entered maintenance and she absolutely loves it. Most of our kid song repertoire we learned from Music Together - and we have a BIG kid song repertoire. In the last year she has been large and in charge in class -- passing out the instruments and collecting them, turning off the lights for the lullaby and then shouting "WAKE UP, EVERYBODY!" when the lullaby is over.

I admit that I cried when we sang goodbye to our dear friend and teacher Susan...

This week Hope also tried something new: horseback riding. Last summer she rode a horse for the first time and loved it. It took awhile for me to get the paperwork together, including the required medical forms and neck x-ray (to make sure she doesn't have atlantoaxial instability - a condition of the cervical spine that affects perhaps 10-30% people with Down syndrome). She was finally scheduled for her riding evaluation this week - and after a long drive, she got to spend 30 minutes up on Sisi, a sweet bay, who tolerated Hope's loud commands to "STOP!" and "GO, SISI!" The therapists had her singing the whole time in an effort to get her to raise her hands and work on balancing with her core rather than clutching the saddle. She loved every minute.

******

Today is National Doughnut Day. Who knows why, or how I learned about it this morning. But it seemed as good an excuse as any to supply Hope with a glazed donut, her very favorite food and almost daily request. We had some other grocery shopping to do and the donut bought me a cooperative helper - bonus! At the self-checkout I sent Hope to the end with the bags and she was diligently shoving items into bags as fast as she could -- making sure to pack her favorite items (crackers, fruit snacks, more crackers) into one bag so she could carry her own stuff.

When I finished paying I headed down to the end to help her finish up just as an elderly couple was passing our lane. The woman smiled at Hope and said, "Training to be a bagger?"

It was one of those 'everything froze' moments for me.

I have no idea if she got a good look at Hope before she said it. If she realized that Hope has Ds. Maybe she would have made that comment to any cute 5-year-old in an orange shirt and hot pink pants being such a great helper to her mom. But in that moment it felt like a comment reflecting the woman's belief that my daughter with her visible disability will grow up and be lucky to bag groceries.

I'm having a hard time teasing apart the way this non-incident slapped me in the face. As I wheeled our wiggly cart to the car, clutching Hope's hand, I desperately wanted to call out to the old woman in the parking lot. To show her, to tell her, to explain the tangle of feelings and thoughts. I know that's kind of ridiculous -- there was nothing I could say. She didn't have malice in her heart. I'm sure of that even if in fact her meaning was 'your disabled daughter will make a great grocery store bagger someday -- with a lot of training.'

She couldn't have known that my emotions are running unusually high these days -- even for me. It's as if the surface of my skin is too aware of sensation, the smell of rain overwhelms, my kids' normal whines and gripes stab me, their giggles make me tear up.

To the extent I can unpack my own thoughts, I'd start with this: There's obviously nothing wrong with being a bagger in a grocery store - and I can imagine a future where Hope would thrive in that job. Chatting with customers, remembering regulars and their favorite purchases, being part of a team and being truly happy. It's not that my expectations for Hope are necessarily "higher" than that, or that I would be disappointed if that scenario became reality. (At this moment it is impossible to describe almost any future for and with Hope that could possibly disappoint.) It's that I don't have fully formed expectations yet and I'm not ready to limit her future to one that is so easy to envisage.

Her life unfolds. It surprises. Like that Rilke quote I love, the days ahead are "new, untouched, full of things that have never been, full of work that has never been done." We are preparing to turn a new page and what she will compose on the coming pages remains to be seen. We are a tangle of every emotion as we await that future.

Closing In

13 days left.

It got me thinking about luck. It's hard to hang your hat on it, ya know. I don't believe that it was bad luck that Hope got cancer. And I don't think she'll need to be lucky to continue to be healthy after her treatment ends. But on the other hand I also don't think God gave her cancer or took it away, or that if we just pray hard enough it won't come back. That's not the God I believe in. So where does that leave me?

Genetic mutation and variation isn't lucky or unlucky - it just is. It's remarkable to me that cancer isn't more prevalent. Life on a molecular level is insanely complicated. So much has to go right. And even with the number of fail safes in the system, you would think that the combination of unrestrained cell proliferation and the prevention of cell death would happen more often.

If I did rely on luck, I suppose I might have to buy into the notion of how too much talking about the future might "jinx" us. But I refuse to believe in causing genetic mutations because of conversations or thoughts or a lack of prayer or even a lack of goodness. I won't put human agency or omission on the hook for a process that even the smartest scientists in the world and the holiest spiritual leaders can't explain.

Did you read Humans of New York over the last few weeks? HONY is an incredible website and Facebook page that tells people's stories - with an image or two and a few paragraphs of text, it manages to convey the breathtaking, heartbreaking, mundane beauty of being a human being.

A couple of weeks ago, I noticed a HONY post that one of my FB friend's "liked" in my feed. The picture accompanying the post had a bald kid in it - so needless to say, I clicked on it. HONY was just beginning a series of stories about families and medical staff at Memorial Sloan Kettering's pediatric oncology unit. Everything I've ever wanted to tell you about the bizarre juxtaposition of joy and terror - and so much more beyond my experience - are laid bare in these stories. When the telling was done, HONY had raised $3.8 million for pediatric cancer research.

Too many kids suffer. Too many families have to endure this journey. It gets so much worse than what we have gone through. And I know better than to say, "I could never endure what they have." Because some paths are forced on you. Sometimes you find yourself not at a crossroads but on an entrance ramp, and you have no choice but to get on and hope for an easy exit. Some things just happen.

*******

12 days left.

For the last month it's been raining. Like every day. Reading the first half of this post, you might wonder if I'm suffering from a little seasonal affective disorder.

This morning, Hope looked out the kitchen window for her daily weather report and exclaimed, "Mom! It's no rainy anymore!" I'll take the opportunity of this sunny day to add to some slightly rosier musings to the rather fatalistic words above.

It's not about luck. And to my way of thinking, it's also not about convincing a higher power you deserve a different path - nor did the God I believe in choose this for Hope or for the rest of us so we could learn something or find some "meaning" in it. S/he can't be bought or sold - and S/he isn't some kind of a sadistic puppetmaster.

I think it's just what life is. Each of us hurtling around the sun, accumulating experiences for as long as our existence lasts. Sometimes our eyes are really open to what is happening around us, but usually we get lost in the details of physical and social tedium - next meal, next paycheck, next meeting, next project, next workout - and that's OK. Because we all have moments every day that jolt us awake for a split second - to notice the way the raindrops are plunking in the puddle or the sounds of giggles from the living room or the aha moment of finally understanding something that had alluded us. And sometimes the moments are longer and we can luxuriate in that knowing that we are living the real thing.

Our last 27 months have been that oscillation between those two aspects of living: the details and the breakthrough moments. The details - of chemo and doctors and temperature checks, of figuring out what to eat and when, where to go and how, how to live and play and work between all the responsibilities and needs of the five of us and the demands of cancer - and moments of recognizing that those details are just the time-fillers, the distractions from the main events of life. Maybe the details of Cancerland make that contrast starker. But lots of human experiences create that striking juxtaposition - some filled with sorrow but others with joy - new babies, time spent in old forests or at the ocean, the loss of a family member or friend, falling in love. Some experiences we seek out, crossroads we are happy to encounter, and others are doors we are pushed through.

********

11 days left.

For the last week or so, Hope's been asking each morning if we can go to the hospital.

"Why?" we ask her. "See the downstairs doctors," she replies.

"Not today."

"One more time see downstairs doctors?"

"Right. Do you remember why we are going to see them one more time?"

"Take my port out!"

This daily script also includes the reminder that she does not like "that little pillow." Every. day.

********

10 days left.

When looking at local schools for the big kids years ago, I visited our old neighborhood school where the kindergarten teacher showed me a bulletin board filled with identical worksheets. Each had the numbers 1-10 on little squares that had been cut out and glued on the paper in reverse order. "This is how we learned to count backwards from 10," she told me. Sigh.

As I walked home, I thought about how Celia and I would count backwards before going down a slide, as we played rocket ship, as we jumped off a curb or the bottom step.

For Hope, the setting at this stage of development was a little different. We count up and down along with the elevator at Hopkins. There's a little screen at Hope's squatting level that flashes the numbers as you travel up and down from the 11th floor. And a kids voice announces the floor when you arrive.

Sweet Hope, bald and masked, excitedly shouting out the numbers as we headed up for chemo or down to the pharmacy. Elevators full of people astounded by her.

Counting down.

********

9 days left.

It was Hope's last day of preschool

She missed out on a lot of her early childhood, but she worked on making up for that lost time at her Play School. She made a couple of good friends, she climbed and spent hours on swings, she loved and trusted some loving, trustworthy teachers. She got clued in to the humor of 5 year olds (hint: poop and being "stinky" are hilarious). It was exactly what she needed.

*******

8 days left.

We are counting down, but strangely as soon as we get to zero, we'll start counting up again. Days and then months and then years of being "off treatment" or OT. The further you get with no "events" - which I think is the medical euphemism for relapse or a new cancer diagnosis - the better, of course. You hope it's the count that doesn't end - with the most significant milestone being 5 years OT which is considered "cured."

*******
7, 6, 5 days left.

Busy weekend. Quinn performed in his first stage production - he was the narrator in Into the Woods -- and he was fantastic. It was so cool to see him take on a new activity with enthusiasm, work at it, and then shine on the stage, clearly enjoying himself so much.

Celia had her last POL today - Presentation of Learning - it's a formal presentation of her year's school work, with reflections on her learning and thoughts about how she will grow in the coming year, for a teacher, her parents and invited guests. Poise, good humor, intelligence and so much insight in evidence.

As for Hope, she is ALL DONE with Methotrexate. I gave her the last dose last night. She's been taking it orally on a weekly basis since November 2014, and I think it makes her feel kinda cruddy. But I hold a major grudge against it because of how horribly she reacted to the much higher IV doses she faced during frontline treatment. The mucositis that led to weeks in the hospital, morphine, loss of 25% of her body weight, fevers, breathing troubles, and so much misery - methotrexate was the culprit. So very glad to finally put it behind us.

Keeping track

32, 31, 30, 29, 28...

We are down to the last month - 28 more nights of oral chemo. That's 106.4 mL of mercaptopurine and 32 mL of methotrexate.

I teared up when the pharmacy tech handed me the last bottles. June 4th she takes her very last dose of chemo.

Each night for the last couple of weeks when I return to our bedroom, peeling off the glove and putting the chemo bottles away, I update Greg on the countdown.

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Within the first couple of days of treatment one of Hope's inpatient nurses brought us her very first Beads of Courage. It's a program where kids with cancer and other diseases get different types of beads to represent each and every aspect of their journey. 

A red bead for a blood transfusion.

A yellow bead for a night in the hospital.

A black bead for a poke.

A white bead for a chemo infusion.

Bone marrow aspirate, lumbar punctures,  hair loss, X-rays - everything has a bead. 

And there are special beads too - for personal milestones or challenges. 

And a purple heart bead for completion of treatment.

In those early days and weeks of treatments nurses would deliver tiny bags  of beads at the end of every shift. I can't remember when exactly I asked them to stop but I remember why. I saw a photo online of a little boy, about 10 years old, who had reached the end of his treatment for leukemia with strings of beads draped around his neck and shoulders. So many beads I thought the weight of them must actually be uncomfortable. He was smiling broadly and the post was triumphant. It was extraordinary to see what he had been through and know that each one of those tiny beads represented another small horror that he had lived through. 

The next day I told our nurse no more beads.

Something about that photo was too much. I couldn't bear the thought of collecting these mini monuments to all Hope would be forced to endure. And projecting myself to June 5, 2016, I could think of nothing I would want to see less than a colorful testament to every stick, poison, and sob from the years spent battling leukemia.

But not surprisingly upon recent reflection I've realized that I was wrong. That Hope deserves to see what she is capable of and to know that her strength is worthy of pride. That we who witnessed her weeks, months, years of treatment should be overwhelmed by the image of Hope draped in impossibly long loops of glass and plastic and clay beads of every hue, of her most precious and light-filled smile despite the weight of it all.

We could catch up - add the dozens - probably hundreds - of beads that Hope has "earned" since February 2014. It would require counting up her clinic and ER visits, her infusions and procedures, blood draws and X-rays. And then we'd have to string them...

OK, let's be real. That seems unlikely. So maybe we'll just post photos of Hope and her smile and imagine those loops and loops of beads in rainbow patterns spilling off her shoulders.

The Last First Day

Yesterday was the Day 1 of Hope's LAST cycle of maintenance. 

She had her LAST lumbar puncture - her last of 24!

Her visit to the "downstairs doctors" was thankfully uneventful. She had the first OR slot so she didn't really complain about being hungry. And she never even bothered to turn on the iPad because she was so busy playing - mostly with this cool projected image activity they have in pre-op. 

After her wake-up doughnut and fist bumps with our favorite PACU nurses who have taken such incredible care of all three of us for 26 months, we headed back upstairs to clinic for her LAST chemo infusion (vincristine, which she had 23 times). 

And then she started her LAST steroid pulse - at post time we are 3 doses down, 7 to go.

It's the home stretch. Seventy days left.

As much as we smile - and tear up - talking about these final milestones - milestones that seemed unthinkably far away in the winter of 2014 when this began, it's hard to explain how complicated it feels from our current vantage point. Relieved to see the finish line. Proud and horrified and dumbfounded to look behind us at the track we've run. And completely unprepared for the road beyond the finish.

Unprepared because too much glee feels dangerous. Because we can't deny the undercurrent of fear. Because after taking one sucker punch, letting down our guard seems foolhardy. Because we can't imagine how we could handle what we can't even say out loud. We are unprepared for the future because preparing means either staying in the dark tunnel we've been fighting like hell to get out of for an eternity -- or really taking to heart the lessons of this journey and learning to face every day, in perpetuity, with courage and joy. And somehow teaching our kids how to do that too. I know it isn't really a choice so much as two extremes we'll waver between, but it feels like a crossroads.

A couple of days ago, on a warm late afternoon swinging session in the backyard, Quinn turned to me and said, "After you have cancer, you can't get it again, right?"

So much is beyond our control. No assurances. No pat answers. Knowing the percentages is not a comfort. We can't rationalize away the fear.

I suppose we will ultimately need to follow Hope's example - as we so often have in the last few years. On June 4, she'll take her last dose of oral chemo and treatment will be over. And June 5, she'll wake up and ask "Where are we going today? My school? Work to do? Soccer game?" And then we'll get busy with the new day.

Two years

Fighting disease.

Waging war on cancer.

Battling leukemia.

Bravery in battle.

It's a popular metaphor: cancer as an enemy to be vanquished by a genius strategy devised by oncologist-generals, an arsenal of the most powerful and deadly weapons and poisons, a skilled army of foot soldiers in the form of nurses and techs, and most of all the valor of our star little soldier.

Sometimes it's a sports analogy instead. It's a "team" around the star player. Coaches and cheerleaders. The opposing team is the enemy: unsportsmanlike, doesn't play fair, needs to be taught a lesson.

There's nothing inherently wrong with any of this. It's just a way to make sense of the senseless. It gives us all roles to play - supporters, reinforcements, prayer warriors, many good guys and one bad guy. But for some reason I can't quite put my finger on, these analogies bug me. In their sunny dispositions and tough talk, the complexity of this experience gets smoothed away into the well-worn paths of these metaphors. Teams and combatants win or lose. They engage the enemy and one comes out on top. But the reality is messier than that.

Maybe I don't want to make sense of Hope having leukemia. I want to cling to the belief that it doesn't make sense in any simple way. She had a mutation, one more likely because of her extra 21st chromosome. It led to a wild cancerous growth of white blood cells. Our discovery of those events still feels random, lucky, head-scratching. We have engaged an incredible set of medical professionals at an amazing hospital to execute the current research protocol to kill those cancerous cells. There are a million ways it could go wrong - infection, short term side effects, long term damage, and the seldom-spoken but ever-present fear of relapse. Along the way we see grace everywhere we look - in the dedication of nurses and doctors and medical techs, in the support of strangers who have traveled this road before and foundations constructed in the wake of the unspeakable loss of a child, in the simple acts of friendship and love when texts and voice mails check on our progress, in the steadfast love of our families. And most of all as we watch Hope grow into a person who astounds us at every turn - her humor and intelligence, her empathy and curiosity, her enthusiasm and insistence on a full life in every moment.

----

Every night at around 11, I put on my nitrile gloves load up a syringe and head into Hope's room. I whisper to her that I need to give her medicine and she groggily sits up, takes her med, sips some water and lays back down. Routine. No problem.

A couple of nights ago Hope sat up and said sleepily, "No medicine." Shaking her head, lips pursed, and a more forceful, "I no want my medicine." I had to do a little cajoling before she gave in. 

Two years of needle sticks and tubes. Chemo and anesthesia, anti-nausea meds and steroids. Sore bellies and aching legs. Interrupted sleep and long periods of confinement. She almost never complains. She tells us how she feels but she accepts what needs to be done. Two years. 

Two years of new words and new skills. When this started she was still speaking in at most 2-word phrases and signing a lot. Now she never. stops. talking. Unless she's singing. Jokes and idioms, stories and memories. Within a month of starting treatment, she wasn't walking or standing up. Now she's running, climbing, jumping. When this started she couldn't be away from me at all. Now she leaps out of the car at school and calls goodbye over her shoulder; she stays home with her big sister while I run errands; she has her therapies at the elementary school where she sits at the table and does every task until it's done. Two years.

Almost done. 121 days and counting.

____

My parents came to visit this weekend. Two years ago at 7:30 pm on Valentine's Day I called and told them to get in the car and come right away. By 9, Greg, Hope and I were on our way into the ER. My parents made the next eight months possible, dropping everything to sit in clinic with us, drive the big kids everywhere, shop and cook, and just be with us, witnessing the very worst days. This weekend we made new memories. Same cast of characters but very different times indeed.